Comportement des enfants et des adolescents

Abstrait

Quality of Life in Children with Spina Bifida: A Cross-Sectional Evaluation of 102 Patients and their Parents

Zegers SHJ, Houterman S, Uiterwaal CSPM, Winkler-Seinstra PLH, Kimpen JLL and de Jong-de Vos van Steenwijk CCE

Background: In the so-called SPIN UTI study on 176 patients with spina bifida and clean intermittent cathererization (CIC) we have studied the influence of antibiotic prophylaxis (AP) on the number of yearly urinary tract infections (UTIs) and bacterial resistance to commonly used antibiotics. We have proven that stopping AP increased the number of yearly UTIs only slightly and clinically irrelevant patients would have to take AP for two years to prevent one extra non-febrile, non-scarring UTI, We have also shown that bacterial resistance improved over time when AP was stopped. In this article we study the influence of the recommended discontinuation of AP on Health Related Quality of Life (HRQL) in spina bifida. Methods: Participating children aged 4-16 years and their parents were asked to fill out the validated KINDL-R questionnaire, combined with specific spina bifida questions. Scores in study participants were compared with healthy controls. Also, the impact of AP, gender, level of spinal lesion, hydrocephalus, methods of catheterization and defecation, mobility and level of schooling on HRQL was evaluated. Results: One hundred and two of the 133 eligible children (77%) filled out the KINDL-R. Patients and their parents had significantly lower HRQL scores than healthy controls (p<0.001). Parents had significantly lower scores than their children, especially in the psychological domains. Severity of co-morbidity was not associated with differences in HRQL. There were no differences between children who continued and stopped AP. Conclusions: HRQL scores are lower in spina bifida patients compared to healthy children. Parents have even lower scores, especially in the psychological domains. Stopping antibiotic prophylaxis does not adversely affect HRQL, and should therefore be pursued to improve bacterial resistance patterns in spina bifida patients.